The end of a journey

Yesterday, your 5 year Talipes journey ended (apart from a few stretches to do each day). After being cast from your toes to your thigh for the first 4 weeks of your life, to wearing a brace keeping your feet shoulder width apart with a metal bar for 23 hours a day for the next 3 months of your life, to wearing it at night times for the next 4 and a half years, this journey has been your whole little life. As I sit here today, that period of time has been your entire life. I know I've already said that! You couldn't sleep on your side, curl up in a ball, feel your duvet on your feet or get up in the morning. And now you can.

Waiting to be seen in hospital yesterday

I am not going to wax lyrical about how brave you were. Or how unfair it was. Or how strong you've been. I never have. The treatment was brilliant. It didn't hurt. We treated it as part of your life. Your routine. You knew no different and so you never questioned it. What I will do now is celebrate with you that you can now curl up in a ball, feel your duvet on your little feet and get up on your own in the morning and that, my darling, is something worth celebrating. Treasure the little things.

No more boots and bar

The memory I will treasure is you, my little 5 year old girl, walking barefoot along the clinical corridor of the hospital so that they could assess your walking. Your pale little feet on that big cold hospital corridor floor. They looked so vulnerable and I willed everything to be ok until I nearly burst inside. I wanted to hold you forever at that moment. 

And that's it. I started writing these letters to talk to you about your Talipes and they have become so much more than that and given me more joy than I can ever describe to you here. I hope, with all my heart, that you will enjoy them when you're older. Until the next time I write sweetheart, sleep tight, curled up in your little ball x

 

Parkrun #2

Last week you ran your first junior Parkrun at age 4. The youngest in a 4-14 age category you ran all the way round the 2km to the finish line. I cried, happy tears. So proud of you. My Talipes baby. 

Last week at the finish line

This week was a different kettle of fish! 3/4 of a km in you took a roly poly tumble and cut your knee. Clearly in pain you said you wanted to run on but after the 1km mark you had to stop. 

There were tears. I was devestated. A combination of you falling on the fun downhill where you like to put your hands in the air and shout "weeee", your disappointment at not finishing and your little hurt knee. All of that rendered Mummy useless at helping you through it all. Practical Mummy with the good advice, she wasn't there. Sniffy rubbish Mummy, she was. I feel your disappointment tenfold and I'm pretty useless at dealing with it. 

Still, a cuddle and an icecream later and all you wanted to do was limp over to the route and run the last km with Mummy. I told you you'd done 1km which was still pretty good but you sniffed that it wasn't 2. So, we ran the route together, on our own, and my determined little girl ran all the way to the finish. 

Of course I want you to be successful but more than anything in the world I want you to keep a tight hold of that steely determination that I saw today. "I didn't give up, did I Mummy?" I cried again. I am so proud of you sweetie. 

Quick stop for a swig of water...

....and to tell me to keep up

Finished! 

What I have learnt today is that things have to go wrong for us to learn how to be stronger. Without pain and failure we have nothing to overcome and learn from. Today you surprised me with your strength. My cautious and careful little girl is also quite brave and determined. 

"Here's to strong women. May we know them. May we be them. May we raise them" ~ Unknown

I love you.

We're nearly there

When you had been in my tummy for 20 weeks, they took your picture inside my tummy and they told me that you had Talipes (Clubfoot). I was scared and sad. Now, I read posts on sites from other parents who are scared and sad at the beginning of their journeys. I want to share our journey to help the other mummies and daddies. I've written about this before (http://laurahigh1977.blogspot.com/2014/06/chapter-1-talipes.html) but now...now we are less than a year from never having to wear your boots and bar again and we should always remember this journey, for us and for others. 

I took this picture today. 4 years ago, we didn't know what our Talipes journey had in store for us

A lot of people don't know what Talipes is. A lot of people think that Clubfoot means one big foot. It doesn't. Here's a picture. It just means that your foot is twisted around the wrong way.

Image via nursingcrib.com

After about 4 weeks of casting, the doctors had repositioned your little foot and you were ready for your boots and bar. These would hold your feet shoulder width apart with a metal bar for 23 hours a day for 3 months then 12 hours a day until you were 5. Until you were 5! That felt like forever. It may be a cliché but time flies by so fast. To the other Mummies and Daddies just starting out on this journey, never, ever dwell on the Talipes or you'll miss the other things and that stuff is way more precious. 

I cried all my tears when you were in my tummy. Once we had embarked on the journey together I was done with my tears and was ready to be strong with you. My only focus was making sure that your treatment was no big deal and as routine as putting on socks. It worked. You slept through for 13 hours a night from being a little baby until.....well, you still do. Your boots and bars are just like pyjamas. You don't question them. I mentioned tonight that you won't have them when you're 5. You looked sad and said that you'd miss them. You asked if we can keep them for your teddy.

Your boots and bar and Right Bunny

My amazing little girl who takes everything in her little, but perfect, stride x

Chapter 1 - Talipes

Dear Molly,

The lady scanning me to look at you when you were 20 weeks old in my tummy checked your heart, your head, your arms, your legs and then she paused. She lingered. My heart stopped for a few seconds. It felt like hours. It's funny how time is long when you're scared. And how time flies away when you're having fun. Time is always the same I guess. Our perception just alters. She mentioned the word Talipes and she wanted someone else to look at the scan. 

The next stage was a haze. People talking, screens, words, but no sound. The volume was off. I was there but somewhere else. Holding you in my arms. Someone else checked the screen. It was Talipes. There could be complications. It could be a marker for something else. “Have a leaflet.” I have a good memory usually but I don't remember their faces. 

Earlier in my pregnancy, following some routine tests, we were told that there was a 1 in 8 chance of you having Downs Syndrome. That news is not something you can prepare for or equip yourself to deal with. I existed through it. I can't boast to have done anything else. I couldn't do anything. We had tests. We waited. Time slowed to a virtual standstill. Empty time. A void.

The tests we had in the those early days were the same tests that would have checked for complications with Talipes. Which is why we didn't have to repeat them. Those tests eventually came back and told us that you were fine, and that you were a she! I remember spontaneously and uncontrollably sobbing then, and every time I told someone the news after that, on the phone, in person, by text, I cried. Happy tears. A girl. 

Now we had to work out what Talipes was. I did what everyone advises against, but does anyway. I Googled it. I saw the word Clubfoot. That was a word I knew. But not from an informed standpoint. I had just heard it. Unless you've experienced it in some way, very few people know what it actually is. It means, when you are born, your foot points downwards and inwards. I worried about whether you'd walk. How would you cope? Was it a ’disability’? Would you need an operation? All normal worries but not to me, not now.

So over the coming weeks and months I read, I talked, I learnt. I explained it to friends and family and gradually to myself. Aside from a wonky foot, you were fine. I was lucky, and I felt it. 

 

So, on October 21st 2010 you, my beautiful Molly Rose, were born. I had my baby, finally. It may sound cliched but, I didn't even notice your foot. Your little face was just so perfect and I loved you, my tiny little girl, unconditionally.

4 weeks later and you were in your 1st cast which was changed every week for 4 weeks until your foot was in the correct position. Then just before Christmas 2010 you went into your boots and bar for 23 hours a day. 3 months later and were in them for night times only and that's the sketch until you're 5. 

I read a lot from other mummies and daddies who feel that their children suffer through this treatment and whose posts on forums are laden with pity. Sympathy and pity are not the feelings which I have chosen for dealing with this. I have tried to treat your Talipes treatment like any other part of growing up. It doesn't hurt. It enables you to walk. It's an incredible gift that we are thankful for every day. You have never had a night out of your boots and bar and have never once questioned the need to wear them. 

I feel as though your attitude towards everything you face is developing, partly, from how I deal with and respond to things and equipping you to deal with life feels like my single biggest responsibility right now.

I love you darling,

I want you to grow up strong

There's a strange paradox I feel in that I want to protect you from things you don't need to worry about whilst also wanting you to help me through my difficult times. That may sound selfish. It does, I can hear it. I don't believe I am the only one who has selfish thoughts from time to time. It's nothing I'd act on. It's just a feeling. I can't control it.

When something's on my mind it should be a welcome relief that you're happy, unaware and only concerned with whether Poppy the monkey would mind if Liony borrowed her handbag for a little while. Instead of being a distraction though, your blissful ignorance increases my worry. I now also have to contend with this overwhelming desire to protect my little girl from the worries of the grown-up world. That responsibility weighs heavily on me sometimes.

So whilst I want you to tell me what decisions to make and comfort me when I'm sad, my natural and overwhelming instincts are to shield you from all the bad stuff. And that's what I do.

You've been poorly this week. 

It's like when you're ill, or dealing with your Talipes. I would always rather it was me than you. Although, I have come to realise that children deal with that stuff much better than adults do. It might sound harsh but you'll never hear me pouring out watery platitudes about how brave you are with your boots and bar (you know no different, it's not bravery) or how your latest cold or flu virus is so unfair (they go round all of the children, every year). Don't get me wrong, I worry about you constantly, that's nature. But I also know that, actually, when you're ill, you just need to be warm and safe with good food and lots of sleep. I want you to grow up resilient and strong. Not feeling as though your boots and bar are in some way punishing or that a winter virus is the end of the world. My favourite thing about this week has been your determined insistence that, "I'm not poorly. It's just a little cough Mummy. I will be better in the morning." That is how we deal with these pesky viruses! 

Tonight you said, 

"Why did you not bring me a toy home tonight Mummy?"

"I wasn't supposed to was I?"

"Yes Mummy"

"Why?"

"That's why you love me Mummy"

You still use "that's why" in place of "because". And that is (one of the many reasons) why I love you sweetheart.

"Parents can only give good advice or put them on the right paths, but final forming of a person's character lies in their own hands." - Anne Frank

An update on your Talipes (Clubfoot)

It's weird. When you were born I didn't take any photos of your feet. Other parents on Talipes groups and forums took lots of pictures and shared and talked about them. I didn't. It's one regret I have. It's also how I deal with difficult things. I'm a bit of an ostrich.

Anyway, here you are three years into your journey with Talipes. When you're bigger you won't remember all this so this is to show you what your treatment was like. Talipes can be hereditary and if you have children one day, and if they have Talipes, then it might be interesting to look back at how the treatment has changed. You are having Ponseti treatment which was pioneered by Dr Ignacio Ponseti at the University of Iowa and has been practiced in the UK for less than twenty years now. Before this the only option was painful surgery which didn't always work very well. Some children, in countries with not much money, still don't have access to this treatment so we are very lucky indeed. 

Your boots and bar that you've worn every night since you were 8 weeks old (the boots have changed as your feet have grown - clearly)

I still vividly remember having to put these on you, my tiny little eight week old baby. All of my instincts were to wrap you in soft comfy things and swaddle you as I had since you were born. As it was I had to put these hard heavy boots on your tiny little feet held shoulder width apart by a metal bar. I knew it was right. It just felt wrong. 

Wearing your boots and bar tonight

Despite the initial shock and heartache at finding out there was something wrong with my baby and then having to go through all the treatment you have embraced it as you have everything we have presented as normal, everyday life. We've never given you the room or the cause to question them and so, you never have. Even during the worst tantrums, luckily, you've never thought to refuse them. Every other part of your bedtime routine has been refused at some point so I am delighted it hasn't extended to your boots. You currently tell me "they're not boots Mummy, they're dragon heads." Then you lift your feet to make them fly.

Minnie Mouse wears your old boots to help her feet too!

You have another two years of wearing your boots and bar and I hope that you continue to accept them as you have done. I will try to explain more to you as you get a bit bigger and I know you'll understand. 

I love you x

Molly's Talipes

I was going to write about this when my daughter, Molly, was born. So it’s only taken me 2 and a half years to get round to it. The silver lining is the extra 2 and a half years of insight and understanding that I now have about how a child (and parents) deal with Talipes.

 

I spent most of my pregnancy with Molly terrified. It was one thing after another. My previous pregnancy had miscarried in the early weeks so I was worried about this one from the off. Then, following routine tests, I got a result of a 1 in 8 chance of my baby having Downs Syndrome. A week later I received a call from the hospital to say my baby was ok and that she was a she. It was the most nervous, elated and emotional I have ever been, and probably ever will be.

 

6 weeks later, at my 20 week scan, I was told that she had something wrong with her foot. A bit of a blur but I heard the word ‘Talipes’ and got an appointment with the consultant. Against my better judgement I went home and Googled it. The word Clubfoot came up although the hospital hadn’t called it that. That was scary because everyone’s heard of Clubfoot but no one really knows what it is. To a lot of people it means one big foot, which it isn’t. I spent the next couple of weeks worried about my baby. Would she walk? Would she be disabled? Would she have to have operations?

 

So over the coming weeks and months I slowly learnt about the condition, called it Talipes because Clubfoot sounds horrible, explained it to my friends and family and gradually talked myself around to accepting that my baby is otherwise perfectly healthy and that a wonky foot can be fixed (with a series of casts and then boots and a joining bar to hold the foot in place). I was really very lucky compared to what some parents face with their children.

 

So, on October 21^st 2010, my beautiful Molly Rose was born. After a reasonably traumatic birth following being induced 2 weeks early because of a liver problem, an emergency forcep delivery and a lot of blood lost, I had my baby….finally. And I hadn’t even looked at her foot. Her little face was just so perfect and I loved that tiny little girl unconditionally.

4 weeks later and she was in her 1st cast which was changed every week for 4 weeks until her foot was in the correct position. Then just before Christmas 2010 she went into boots and bar for 23 hours a day. 3 months later and she was in them for night times only and that's the sketch until she's 5. 

I read a lot from parents who think all children suffer through this treatment and who let their children out of the boots once and struggle to get them back in them again. Every case and every child is different and I'll never judge any parent for dealing with the condition however they see fit. All I will say is we never fussed over Molly, never felt bad for her, never made her Talipes into anything other than a normal part of her routine. She's never had a night out of her boots and bar in 2 and a half years and has never once questioned the need to wear them. Children's attitudes towards everything they face develop from ours as their parents and equipping them to deal with life is our single biggest responsibility.